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Mum with MND

Hi All,
After progressing through all the usual tests from around April last year my 82 year old mother was diagnosed with MND before Christmas having been in rude health all her life. I am the primary carer, other family members and friends are in different countries or too old themselves to be much help and finding the authorities variable in their helpfulness. I am managing but a bit isolated and out of my depth off and on so far. On a steep learning curve with the health services and all the info so any tips and short cuts most welcome. Seems to be moving so fast, I'm assuming it's the bulbar type as her swallowing and speech are effected. Any experiences of what I can expect to need to deal with and how quickly would be invaluable. Also are there any ideas to help her with communication as she usually talks the hind leg of a donkey (!) and is becoming increasingly frustrated with her speech difficulties. Thanks. x

You will never replace speech totally but there are various apps and machines that can talk for you. I have been using them for over five years. Hopefully she has a team around her and one of them will be a SLT speech and language therapist, they should help sort out some speaking symptom. You can try and do some things yourself if you have a tablet computer.

When you say that it is progressing fast, when and what were her first symptoms?

How are things now?

Best wishes Terry

Last edited by Terry; 10th January 2019 at 17:28.

TB once said that "The forum is still the best source for friendship and information."

It will only remain so if new people post and keep us updated on things that work or don't work and tips.

Please post on old threads that are of use so that others see them and feel free to start new subjects and threads.

I am sorry to hear of your mum's diagnosis. You will find a lot of support from the friendly folk on this forum.

I can understand why you feel a bit isolated - there is a lot to come to terms with and it can all seem a bit daunting. I used to feel like that, but since joining this forum any feelings of isolation have subsided. There is also a lot of support, advice and information at local MNDA group meetings, usually held every month. Also, I have had a lot of friendly support and advice from my Regional Care Development Adviser (RCDA). Links to details of local MNDA groups/branches and the RCDA's can be found below:-

There are various 'medical professionals' who your mum should get support and help from (free of charge) e.g. an MND specialist nurse, dietitian, speech and language therapist, physiotherapist and occupational therapist. I have realised from reading various posts on this forum that, unfortunately, it can be a bit of a 'postcode lottery' about what support is provided, and not everyone diagnosed with MND is supported by all of these professionals. It can also take some time from being diagnosed to when the support starts. If you haven't done so already, I would recommend that you contact your local Regional Care Development Adviser because that person will know what support is available where your mum lives, and may be able to access the support more quickly for her.

You mentioned that your mum's swallowing and speech are effected. I have provided some advice/info below, which you may not already be aware of, and that you might find helpful.

- As already mentioned by Terry, your mum should be seen by a speech and language therapist, who will be able to assess her and advise about suitable communication aids. In the meantime, there is a link to info about the MNDA's 'communication aids service', below:-

- Hopefully, your mum will be seen by a dietitian to get advice about nutrition and food that is easier for her to swallow. There are nutrition drinks such as Fortsip and Complan - your mum's GP might prescribe these if she is finding it difficult to consume enough food/drink to get the calories and vitamins/minerals that she needs. Below is a link to the MNDA's info about 'swallowing, eating and drinking' (it also includes info about feeding tubes):-

If not already done so, and depending on what needs she has, your mum might want to ask for a 'needs assessment' from her local council - there are NHS guidelines about this, and I have posted a link to these below:-

Sorry you've had to join the Forum, hopefully we can make you feel less isolated.

The first service your mum should see is a Speech and Language Therapist (SLT) who'll assess her swallow and speech and advise on how to safely eat and drink and if your mum should have a feeding tube, if she wants one.

The SLT also will advise on, and "should provide" communication aids. If your mum is OK with tech, there are text-to-speech apps, if not, there are communication boards or a Lightwriter.

Does she attend an MND Clinic? She should get help there. You may have to chase (and chase and chase ) for an SLT appointment.

Hospices are great resources and maybe mum could attend Day Hospice to give you a few hours off per week?

Thank you all for your advice. Mum presented with foot problems around March/April 2018. She was very independent and active in the garden and with a couple of local social groups prior to this but she has not left the house aside for hospital appointments since about June/July and now struggles to get about the house using mobility aids. She has found being taken to hospital appointments and even spending time talking to friends exhausting so she could not attend MND meetings or a hospice. She has seen all the relevant teams but help has been very slow and aggravated by the Christmas period so much so that I just had to start getting things done myself. She has seen Speech and Language but they have not offered any solutions, we have a text to speech app on an Ipad which mum has not tackled yet but as I am at a distance it is getting increasingly difficult to understand her over the phone. A large part of my problem is that I live 2 hours away and I am self employed so making sure she is ok and monitoring her progress is very difficult - I have just organised home visits from a carer who will start soon and in the process of adapting a downstairs bedroom and bathroom for her. I have just arranged one visit a day from the carer to start with, I'm sure they will quickly assess her but does it sound to you that she needs more visits?? She is trying to eat well and has Complan and is not a big person but is already under 7st. She is so weak and tired all the time and her needs seem to increase on a weekly basis so I am looking into how best to apply for Continuing Care as I understand this is a minefield!

I think that you should try and get your mum to visit the hospice. They understand a bit about Mnd and will help her . They are also a probably a lot better at assessing and getting things and people to help her.